Every special needs parent knows that there are times when you have to step in and advocate for your child.
Sometimes, it’s at a parent/teacher conference. Sometimes it’s an IEP meeting. Sometimes it’s on the sidelines at a sporting event.
Before our kids have a voice or can advocate for themselves, we have to be the ones to speak up and help others learn how to help our children.
I did just that today.
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I had asked for this meeting with Howie’s teacher and his two aides. It wasn’t a demand but more of a “I need to come in.” It was becoming clear that they were having trouble understanding Howie’s sensory processing disorder and how it manifests itself at school. He was having more outbursts, more meltdowns and new physical aggressions – things we hadn’t seen in over two years. I needed to go in and help them understand my child.
I was nervous. I’ve never done anything like this before. They “knew” autism, but I had to explain SPD in a way that they would get him.
I read MOM-NOS’ post “A Hair-dryer Kid in a Toaster-brained World” three times while working on my presentation. It’s my go-to post always when trying to explain Howie’s brain. I knew if I could explain Howie’s SPD half as well as MOM-NOS explained autism, I would be in good shape.
I searched my brain for an analogy like hers. And it finally came to me.
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I met with the special education teacher and the two aides on a cold rainy morning. The four of sat in a small office, and I handed them my powerpoint presentation.
“My goal here,” I said, “is to help you understand Howie and how his body works, so that you can help him understand how his body works. Especially in the classroom.”
My presentation was titled: “All About Me and My SPD”.
I gave them a quick definition of what SPD is: a neurological disorder that causes a virtual traffic jam in the brain. I explained how it’s like autism in that way, but SPD is more about how the brain interprets the information from our senses. When it gets mixed up, it can cause a child to behave inappropriately.
I talked about sensory seekers and avoiders. I asked them to think about their responses in certain places. Do you like crowds? Heavy blankets for sleeping at night? Do you get nervous around lots of noises? Are you easily overwhelmed? I shared my fear of stores like Costco and Wal-Mart – how just being in those places made me so uncomfortable that I choose not to shop there.
I told them that Howie was both a seeker and an avoider. That we describe him as “being uncomfortable in his own skin”. And his aide gasped a little.
I made sure they knew that Howie has had these issues since birth. How I knew from Day 2 in the hospital that he was different because of his non-stop crying. That he wouldn’t sleep without touching someone. Stage 3 baby foods made him gag. He cried at loud noises and had no sense of space. He asked for hugs all the time – not out of love but out of desperation. He couldn’t sit still without moving and would run laps inside our house for hours. I told them he didn’t sleep through the night until he was four.
And again, they gasped a little.
We talked about his duel diagnosis of sensory processing disorder and autism spectrum disorder and how they work hand in hand. If you understand why Howie feels like he does, then you can understand why he behaves like he does. And I reminded them that we’ve worked with several occupational therapists to get to fine tune his therapy. This was not stuff that we made up.
We discussed the eight senses – sight, smell, taste, touch, hearing, vestibular, proprioceptive and the introceptive sense. I explained what each one was and Howie’s reaction to it all. We talked about that he never gets dizzy, how eating is hard for him, and how he drinks juice constantly to feel “full”.
And then, it was time to help them help him.
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I called the slide “What Does Howie Need for Success in School?”
“We know Howie’s favorite thing is Hot Wheels Cars, right?” I said. “So let’s think of him like a car.”
•He needs to fill that tank.
•He needs to fill the tank without being removed from the classroom as much as possible
And finally, I gave suggestions for “filling his tank”:
•In the classroom
•Out of the classroom (when needed)
I concluded the presentation with a list of books and resources for them, with the strong reminder that Tim and I are their best resource. Use us. We have been living with this for 5 1/2 years.
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We talked for a while about immediate changes to his schedule. No more mandatory breaks at scheduled times, with the exception of the one first thing in the morning. They needed to be on demand and honored. We talked about the need to listen to his words and watch his body. And we shared that he is already becoming very self-aware – knowing that he needs putty at circle time to help him focus and “jobs” to make him feel proud and accomplished. His aides said that they are encouraging his classroom teacher to call on him more, that just because he’s not looking her in the eye when she’s teaching, it doesn’t mean he’s not attending.
I stood up to leave and the special education teacher said to me:
“Thank you. I see your child in a whole new light now.”
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There comes that time when we need to take a moment and step in for our children. No one else will do it for us. I believe in my son. I know he will move mountains if he’s given the opportunity to try. I needed his teachers to see what he could do when he is feeling like Howie.
I know in my heart they will get it.
And if they don’t, I’ll be right back there again leading the way. I believe in me too.
“Try what you need to try,
No one should question why,
Believe in yourself,
Believe in yourself.
Folks may say you’re different,
That you’ve gone and lost your senses,
But the world is yours to walk in,
Go ahead and leap the fences.
And you’ll see,
Believe in yourself
And the world belongs to you and me” – Believe in Yourself from Sesame Street (performed by N’Sync)
October 27, 2011 at 2:57 pm
AWESOME post!! No one knows a child better than their mother!
October 27, 2011 at 9:41 pm
Today, my son’s specialist said the exact words to me. In addition, said there are a few health care professional who will not take the time to listen to parents, instead, they think it relative that once the mother is stress the child feeds of that stress.
This is not always the case with regards to children with special needs, parents especially mothers need their concerns validated. It is onerous on the health care providers and school facilitators to act in the best interest of our children. In a perfect world this is exactly how it would be. Conversely, we do not live in a perfect world – the system is deficient, and we, the parents must always be the child’s children best advocate.
Thank you for sharing this lovely article. I have walked a mile in your shoe so I do understand…In solidarity with the struggle. Peace!
Great Job!
October 28, 2011 at 12:04 pm
thank you so much. It means so much to know I’m not the only one working on these issues with my son.
October 27, 2011 at 3:44 pm
I believe in you and Howie. Wholeheartedly. Great job, mama!
October 27, 2011 at 8:02 pm
thank you. I learned from you.
October 27, 2011 at 3:45 pm
You said this beautifully & I fully intend to remember the tips you provided today to help create a classroom plan for my boys at their IEP meetings soon.
Thank you so much for being such a wonderful advocate for your son (Henry or Howie?). 😉
October 27, 2011 at 8:03 pm
oh whoops! thank you 🙂
And thank you so much. I hope it helps.
October 27, 2011 at 4:11 pm
How wonderful that he has you to advocate for him!
October 27, 2011 at 4:37 pm
Wonderful! You are amazing.. what lucky boys you have.
October 27, 2011 at 4:52 pm
Nice job, mom! 🙂
October 27, 2011 at 4:56 pm
Can not wait until you are ready to share the presentation. I know I could use something similar for my guy but it’s hard to know where to start. I would love to take some ideas from your experience. Congratulations to you and to Howie! And what a gift that the teacher ‘got it.’
October 27, 2011 at 8:03 pm
I can send the whole thing to you. It’s not much more than what I have here, but I have it in powerpoint if that’s what you’d like. Thank you for the encouragement!
October 27, 2011 at 5:59 pm
Hi I thought this post was amazing, you are so strong and fearless to me. Some of the things you talked about made sense to me for the very first time ( what you described from birth was exactly the same for my son thank you) I am still coming to terms with it all ( he was diagnosed earlier this year and he is 7) and we are having so many issues at school that I have no idea how to solve! In Australia it is a bit different and the most he has is a special aid teacher for a couple of hours twice per week at the moment. Thank you for this post, take care and I hope the teachers are better able to help Howie.
October 27, 2011 at 8:11 pm
thank you. Sometimes I wonder if my kid was (is?) the only one like that too…it so helps to hear from you. We’re all here if you need a hand to hold. Good luck.
October 27, 2011 at 6:34 pm
You are an amazing mom, communicator and advocate. That was fantastic!
October 27, 2011 at 6:51 pm
Alysia,
You are amazing…but I knew that already! I have a student this year that really mirrors all the behaviors you wrote about in your presentation. I am thinking of taking your post and sharing it with his aide and the special education teacher I work with to see if using some of your tips will help him in the classroom. Thank you for sharing this with us.
October 27, 2011 at 8:12 pm
You have no idea how much this means to me coming from you. You will always hold a special place in our hearts for being the amazing person and teacher that you are. Thank you. Let me know how it goes in your class.
October 27, 2011 at 8:34 pm
WOW.
October 27, 2011 at 8:39 pm
Bloody. Freakin. Brilliant!
Well done, Alysia. You have put together such a fool-proof explanation that I genuinely pity anyone who doesn’t get it. You go, sister!
October 28, 2011 at 12:05 pm
ha! 🙂 thank you. and thank you for sharing it.
October 27, 2011 at 10:27 pm
I love this post. Congratulations! I learn from you. Thank you.
October 28, 2011 at 12:03 pm
right back at you. I learn so much from you too.
October 27, 2011 at 10:53 pm
OMG! What an amazing presentation. You are a wonderful advocate for your son.
October 28, 2011 at 12:03 pm
thank you 🙂
October 27, 2011 at 11:52 pm
You are amazing. What a great thing to do for your kiddo. This goes straight into the file next to the toasters and hair dryers presentation. Perfect.
October 28, 2011 at 12:03 pm
I learned all this from you. You have taught me how to take my kids at who they are and show others how to love them like I do. YOU are the amazing one.
October 28, 2011 at 1:29 am
You are amazing- to work in his special interest in that way is perfect. I believe in Howie, and I believe in you too. And I believe that with this presentation and your guidance, the rest of the school year will be a much smoother ride for everyone.
October 28, 2011 at 12:02 pm
thank you my friend. Fingers crossed.
October 28, 2011 at 9:52 am
I love that you found your inspiration for the analogy by looking at what he loves most…cars! By the looks of it, you did a phenomenal job advocating for your little guy. I’m so glad you posted it all out like this rather than just simply saying you had a meeting to discuss his sensory needs. Putting it all out there, you helped me see a few things differently and where I can make some changes for my crew. Especially the whole idea of giving breaks when he needs them versus mandatory scheduled breaks…huge lightbulb moment for me, especially when it comes to Aaron. Thank you! I hope his teacher and aides really chew on this for a while and that things improve tremendously so that Howie can rise to his full potential in the classroom!
October 28, 2011 at 12:02 pm
Thanks Kelly 🙂 We’re already seeing immediate changes so that’s very exciting! I hope it helps Aaron too. Let me know how it goes!!
October 28, 2011 at 11:54 am
This is now my go to post. We are having a meeting on Wednesday because my sons teacher is just not “getting him”. I am going to use some of what you said to help describe my son. Your post could not have come at a better time for me. Thank you so much for sharing this. Great job mom. Your boys are so lucky to have you.
October 28, 2011 at 11:59 am
wow! thank you 🙂 good luck on Wednesday! I hope it goes well. Keep me posted!
October 29, 2011 at 3:40 pm
Fantastic work, not only for your son but great advice for others too. I hope Howie’s reachers understand hime more now and put what he needs in place. It will make all the difference for his success in school and life.
well done:-)
xx Jazzy
October 30, 2011 at 7:18 pm
Oh Wow Alysia…you are pure genius!
Well done….I want you on MY side for sure!!!!
November 1, 2011 at 8:07 am
Alysia – you are so amazing
I LOVED Your post
totally have faith in you too
November 4, 2011 at 7:10 am
thank you my friend. Knowing you’re there means a lot.
November 3, 2011 at 9:52 pm
This post is amazing. I am filing it away for future reference…I love the analogy. Perfect!
November 7, 2011 at 7:08 am
thank you so much!
November 6, 2011 at 6:24 pm
That was fantastic. Absolutely fantastic.
November 6, 2011 at 10:04 pm
[…] thinking about the instant changes we’ve seen in Howie’s plan for school since my presentation. I’m so happy that things are better but know that it shouldn’t be this […]
November 6, 2011 at 10:57 pm
Do you have any idea how utterly amazing you are? Really? You so rock! I may be borrowing some of your material here if things don’t get better for Danny. It’s amazing!
November 7, 2011 at 7:08 am
I’ve learned from all of you who have done this before me. I hope things get better so you don’t have to use it.
November 6, 2011 at 11:02 pm
What a great post! So many parents are afraid to rock the boat when it comes to school issues, but you did a wonderful job of approaching the team in a non-confrontational way that was meaningful for everyone (love the special ed teacher’s comment at the end). So inspiring …
November 7, 2011 at 7:08 am
Thank you very much! thanks for reading it 🙂
November 8, 2011 at 10:03 am
thank you for this, it’s just helped me piece together something similar.
November 8, 2011 at 10:15 am
YAY! that makes me so happy. Thank you for sharing and I hope it helps.